EDUCATIONAL

OIFE at EURORDIS Winter School

EURORDIS launched Winter School with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures. The 2nd edition…

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ADVOCACY

Call for proposals for research projects

The European Joint Programme on Rare Diseases (EJP RD) has made a preliminary announcement about the upcoming 2020 call for proposals for pre-clinical research to develop effective therapies for rare diseases like OI. A number of national and regional funding organisations will participate in the call, alongside the European Commission and the EJP-COFUND action, to…

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ADVOCACY

CEF-meeting in Brussels

On November 8th Céu Barreiros (treasurer) represented OIFE at the Council of Federations-meeting in Brussels hosted by EURORDIS. The Council of European Rare Disease Federations (CEF) provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases. The council also allow federations to work together on…

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ADVOCACY

OIFE input for EU research

What do you think are the most pressing challenges that EU funded research and innovation should tackle for the rare disease community? The European Commission is preparing the implementation of Horizon Europe, the next EU research and innovation programme (2021-2027) with a budget of €100 billion, in an intensive co-design process. As part of the…

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RESEARCH

Physical Function & Soft Tissue Health in OI

Interview with Dr. Alex Ireland and Dr. Sergio Orlando Who are you and what is your relationship to OI? My name is Dr Alex Ireland, Senior Lecturer in Physiology at Manchester Metropolitan University, UK. My research has previously focused on how the shape and structures of our bones and joints is affected by physical activity…

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CONFERENCES

OIFE at Mereo

On January 22nd 2019 OIFE was invited to the pharmaceutical company Mereo Biopharma in London to talk about OI from the perspective of people who have OI themselves. OIFE was represented by Honorary Member Taco van Welzenis, who also talked about how the OI-community is organized and what is important for us in research and…

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CONFERENCES

Quality of Life 4 OI

Make sure you mark the date November 22nd – 25th 2019, when the international conference QualityofLife4OI will take place in Amsterdam. The conference is an initative from Care4Brittle Bones and is hosted by a coalition of OI-organizations (Care4BB, OIFE and OIF), Medical professionals (ERN – BOND) and the Industry. It is coordinated by Foundation Care4BrittleBones.…

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RESEARCH

Research Interview – “Pain and OI”

Interview with Rubén Muñoz Cortés, psychologist of Fundación AHUCE Who are you? I am Rubén Muñoz Cortés. I live in Valencia, Spain. I am a psychologist with a Master’s Degree in Clinical Psychology and Neuropsychology. I am a PhD candidate in Clinical and Health Psychology at the University of Valencia. Throughout my career, I have…

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EDITORIALS

The Voice of People with OI

February’s OIFE Magazine main topic is research and I could have called this editorial “The patients’ voice”. But to be honest, I’m not too fond of the term patients. Patients belong in hospitals. The OIFE represents people with OI and families, who most of the time live active and meaningful lives outside hospital walls. There…

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